When the statewide program for First Signs was launched in Minnesota, in April
2003, we knew there was great need there as in other states across the country.
However, we had no idea how enthusiastically our program would be received by
health care professionals and, gratifyingly, how well it would be adapted and
carried forth by local clinicians and educators.

In the face of rising statistics by the CDC that Autism Spectrum Disorders (ASD)
is the third most diagnosed disorder in early childhood, our goals were to enhance
Child Find efforts and the identification of young children with ASD, so that
critical, intensive interventions can begin earlier. According to the CDC, Minnesota
mirrors the increasing national need. One in six children is diagnosed with a
developmental disorder, and one in 166 with ASD. Yet, current health care systems
are not effectively identifying these conditions during toddler and preschool
years.

As we knew in launching this pilot program, despite the average age of three
to six years for diagnosis of ASD, parents and physicians can usually tell that
something is wrong by 18 months. Parental “wishful thinking” and
physicians’ reluctance to deliver bad news won’t change these facts.
A year—even months—can make a huge difference in a child’s
development.

Consequently, our objectives for the Minnesota program, funded by that state’s
Department of Education and endorsed by the Minnesota Chapter of the AAP, were
to:

Increase knowledge of early warning signs among pediatric practitioners
in Minnesota
to raise their level of awareness;

Improve frequency and quality of screening young children (4-36 months)
in Minnesota (the current Denver Test has proved inadequate,
but unfortunately, is still used);

Facilitate timely referral of children in Minnesota to local Early Intervention
programs; and

Lower age at which children are identified with autism and other developmental
disorders in Minnesota.

A year later, the program has made great strides and, in doing so, enlisted the
help of clinicians and educators in creative ways, which they themselves have
developed to fulfill these objectives. After our extensive training and provision
of both educational and screening materials, the hard work of these Outreach
Trainers in the field has produced some dramatic results.

Earlier screening and referral for evaluations is yielding better identification
practices in Minnesota. After the implementation of this program, The Minnesota
Department of Education gathered Child Count data (Dec. 1, 2003) indicating a
significant increase in identification of children with an ASD in the age groups
under six years and more dramatically for those under age three. There was a
75% increase seen in the number of young children identified in the 0-2 year
age group from ‘02 to’03. The overall increase in identification
of ASD for all children 0-21 year in that same period was 23%.

In summary, more than 1,100 medical practitioners and 3,200 early childhood practitioners
were trained by the project, and screening materials and videos are being widely
distributed. Outreach Trainers, especially Early Childhood Intervention Educators
and clinicians, are making remarkable local contacts and providing critical training,
and preliminary evidence suggests that more young children are being screened
and identified earlier in Minnesota.

How did we do it, and how can these achievements be replicated in other states?

Here are some of the steps we took. Over most of 2003, these program components
were initiated:

Train-the-trainers forums were conducted to prepare 130 professionals
as Outreach Trainers, who expanded the training and will deliver more individualized
training
tailored for clinics and practitioners across Minnesota. These Trainers include
Early Childhood Intervention staff and Autism Resource Specialists from all
regions of the state.

In the past year, the Outreach trainers have organized and provided over
165
workshops to provide MN First Signs Training
for an additional 325 physicians and 360 additional medical practitioners.
Further
training has been provided
for more the 3,238 other early childhood professionals and community providers
across the state.

First Signs Screening Kits have been distributed
to over 900 practitioners and clinics.

Public Service Announcements were produced and are now aired across the
state
in collaboration with the Autism

Society of MN.

Project Exceptional has begun to train Child Care Providers about the
Red Flags
and Early Warning signs of Autism.

Physicians with MN Chapter AAP: Committee for Children with Disabilities
have
begun incorporating First Signs information into
physician training program at
University of MN.

Among the Outreach Trainers in Minnesota were the dedicated team of Michelle
Westre, MS, and Elizabeth Olson, MS, special education teaching staff members
of the Early Childhood Department in Mankato, MN. Clinicians and educators in
other parts of the country could easily duplicate their strategic approach and
its dramatic results.

Below are some of Michelle and Liz’s key recommendations:

Begin by seeing yourselves as part of the whole health care team, providing
important and much needed information to the physician and staff for early
screening and
referral.

Form a team with another educator or clinician to complement each other
and keep
the momentum going when schedules conflict and energy flags.

Distribute the First Signs Screening Kit to
clinics and offices of medical professionals. The kit contains an educational
video, a wall chart listing the developmental
milestones and ‘Red Flags’ (early symptoms) of ASD, a list of
referral and contact numbers in the region, and highly validated screening
tools.

In communicating with the physicians’ offices, adopt some of the
marketing approaches of the drug companies in terms of contacting, requesting
informational
appointments, and providing “leave behind” materials.

Focus on the pediatricians’ offices. If the pediatricians accept
the information
and implement it, local family physicians will follow.

Since most medical practices have once a month luncheon meetings to which
they invite a speaker, request time from the nurse coordinator or office
manager for
your program presentation and ask to address the whole staff.

Know that there will usually be a great level of interest, but different
practice members will have differing levels of knowledge about developmental
conditions
and may require detailed explanations.

Be flexible about meeting times and places, and persistent in your contacts
to
arrange them.

After your office meeting, follow up, requesting time for a one-on-one
with the nurse practitioner or physician to walk him or her through one of
the more versatile
screening tools, to help them gain familiarity with the process.

Educators were an important part of the outreach team in Minnesota, but physicians
and specialists participated in the program, as well. Dr. Tom Scott, a Minneapolis
physician specializing in developmental and behavioral pediatrics commented, “I
have been increasingly aware of the need for a better process of identification.
Over half the children I see present with signs of ASD. I was very excited to
learn of the First Signs program, and am pleased to be collaborating with others
who have similar interests in this area.”

Dr. Scott had affirmation of the worthiness of such outreach, educational programs
when parents brought in one of the youngest children suspected of ASD he had
ever seen. At nine months, the infant was presenting problems with “joint
attention” and exhibiting rocking motions, two warning signs of ASD.

The First Signs program in Minnesota has demonstrated that with the help of committed
educators and clinicians, training and outreach for early screening can successfully
close that gap.

Phil Sievers, Ed.S. is a specialist for autism spectrum disorders and coordinates
the Minnesota Autism Project at the Metro ECSU in Minneapolis, MN under a grant
from the MN Department of Education. phil.sievers@state.mn.us

Nancy Wiseman is a parent of a child with special needs and she is the founder
of First Signs, a national non-profit organization dedicated to educating professionals
and parents about early identification and intervention of children with autism
and other developmental disorders. nwiseman@firstsigns.org.